Hi. I'm Steve - you've found my blog. I talk about my experiences with dialysis and transplants all while trying to live a "normal" life. A young man's view - tinged with humor.

The Adventures of Kidney Boy

A Journal About Living With End Stage Renal Disease. Dialysis. Transplants. Love. Family. Friends. The Unsung Donor. This is my life, from the end of a needle to the bottom of a pill bottle.

Thursday, April 5, 2012

Changing The World - starting small.

The Mega Millions Jackpot was almost $640 million dollars last week. $640,000,000. Over half a billion dollar. Winning that kind of money inspired a lot of people around the country to buy tickets last week - including me. I only spent a couple of dollars on it; the odds of winning are astronomical, but as they say - hey, you never know.

I know most people dream of all the crazy things they could do or get with that money - half the fun of big lotto jackpots is just the dreaming. I'm sure the reality of winning is quite different; your life changes, a lot for the good, some for the bad - people come out of the woodwork to beg you for money, etc. Whatever.

The dream for me.... well, I can say it's definitely changed for me over the years. Sure, when I was young, I dreamed of walls of guitars, tour buses, studio recording, fancy cars, exotic vacations, giant mansions.... all kinds of gadgets the heart could desire. After I got sick, though - I always thought "What could I do with that kind of money to help make a difference in the way that I would want to." Sure, I still think about paying off all my debts, helping out my family and friends, getting a reliable automobile and investing some for the future.... but winning hundreds of millions of dollars? Wow...

I have these dreams of building dialysis centers in more remote places in the US that don't have close facilities. I know a lot of people that are sick that live in the northern part of NY, in the Adirondacks, often have to travel far - to Syracuse or Albany often to see nephrologists or do dialysis. I always think about building clinics up there - you know, it wouldn't just be providing people with the care that they need, but also it would provide jobs for people..... I really can't tell you how dreaming of doing something like that makes me feel. Oh, I plot out in my head - the kinds of amenities I'd have for the patients there - comfortable plush seats and couches, beds, cable/satellite television, Wi-Fi for patients and staff alike, a library full of books and DVDs, comfortable and modern work stations for the staff - pleasant green room seating for the families, a great in house cafeteria - offices for nephrologists in the building, emergency care services, nutritionist services, an ambulance garage.... I think about it every time I see a big lotto jackpot. I think of starting a charity group that helps raise money for struggling families of dialysis patients - one that really gets funds to the people who need it, not just some charity that functions to raise funds to pay its board members. I think of starting a massive organ donation awareness group.... I wish I had the funds to pursue projects like this. Nothing would make me happier than to spend it all on getting the ball rolling on things like this.

I have trouble sleeping at night sometimes, and I often think about these dreams to put me at peace and lull me to sleep.

But I know they're dreams - right now, I guess I have to change the world in small steps by changing mine first. It's easy to daydream about these kinds of things - but life is a cruel mistress, and giant sums of money just don't always fall into the hands of people.

Life after a transplant just takes on such a new meaning - I'm really emotionally all over the place right now. I get so sensitive about people who are suffering from diseases that are chronic and potentially deadly. I have quite a few friends in my life right now who are all going through some incredibly difficult times, health wise. All we want is our chance to pursue life, liberty and happiness. I would give anything to give them relief, or be able to cure their ailments. And here I sit, with a transplant that is functioning so well and I feel so helpless to help them. Just a year ago, I was sitting at death's door; I was seriously ready to die. I'm lucky. There isn't a cure for End Stage Renal Disease, but a kidney transplant gives you the closest shot you'll ever have for a normal life. And Goddamnit, it's just not fair to some. And then I hear so many people I know talk so callously about health insurance, medical care, medicare and medicaid.... so callously. It's just some hot button political issue to them, and they can write off the faceless masses of the suffering, and here I am - having lived it, seeing my friends and family live it, and I think "Do they ever think about us when they say these things?" The sick far too often get relegated to stereotypes, or faceless numbers on some insurance bill. We have faces. We have lives. We have families. We have loved ones. We have a life, and damn it, we want to live it the best we can. We are not just chattel to be disregarded or thrown away. We have just as much right to the pursuit of life, liberty and the pursuit of happiness. The Pursuit Of Happiness.

The money can be damned. I don't want to be a drain, but I just want the chance to be a part of this world. I ain't too good at many things in this world that seem really useful, but I think I'm damn good at loving being a part of it. I know a lot of others who are damn good at being a part of it, and they're stricken with disease too.

As usual, I'm rambling. It's probably the steroids I'm on for anti-rejection, but I just feel so passionate about everything these days. I think it's because I've been through 10 years of illness - 10 years of being unsure about where or who I'd be in the future. 10 years of being ready to die if things went south. And I'm only just starting to come out of that.

So, of course, like every dreamer - I want to change the world. I guess I just have to start by changing me, and you know what - changing me, getting back into life... being an independent success in this world.... it's often scarier than facing those needles every day. I'm glad as hell to be off dialysis, but now what?

It's up to me. I'm resting - still trying to deal with and put the stress and trauma of what I had dealt with behind me. But it's all up to me. Just a little more time is all we're asking for. Then, out I'm going to come.... guns blazing, and working to at least make the world around me a little better. The rest will hopefully come.

And I swear if by some miracle of fate or hard work I become insanely successful, you bet your ass I'll have that dialysis center constructed in the North Country. And if that's a success, maybe I'll seek out some more remote locations in the US and build more there. Then, the world.

1 comment:

I have not had time to read all of this yet because I want to read it when I can pay attention, but I read the little bit about building clinics in remote locations and I share this dream. I don't even think that Tahoe Ca is that remote, but I'd love to start there. Glad I found your page.Damon Johnson.